Why Oregon is at the forefront of change on end-of-life care

ASHLAND, ORE.
— The Terri Schiavo case and its emphasis on end-of-life care could put a spotlight on Oregon, where policies and practices point to a future most Americans apparently want and are working toward: personal decision-making, widely available hospice care, and the final act of human life played out at home and not in a hospital.

In all these areas, studies show, Oregon is ahead of the rest of the country.

Some of this has to do with its unique legislation. The country's only "Death With Dignity" assisted-suicide law is the most well-known and the most controversial. The number of people choosing this option is small - about 30 a year, or fewer than one in 1,000. But its availability has increased interest in how to alleviate the discomfort and despair that can feed a desire to end one's own life, as well as to more planning for such an eventuality.

When Oregon voters first considered physician-assisted suicide a decade ago, medical ethicist Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, predicted an "enormous long-term impact on American public life - how we live and how we die." Critics warned that a wave of suicides would follow, including a rush of patients from out-of-state and those pressured by relatives to end their lives out of economic considerations.

Instead, many more people here end their days at home or in hospice settings where they have emotional and spiritual support as well as palliative (pain-management) treatment. Among the 50 states, home death rates are highest in Oregon, and hospital death rates are lowest. Oregonians are also more likely to have "living wills" - documents in which they ask not to be kept alive by artificial means if recovery seems improbable - and medical directives on file, and they're more likely to decline medical treatments (including feeding and hydration tubes) that prolong life.

This is consistent with what most Americans say they want. The Gallup polling organization, for example, has found that 9 out of 10 Americans say they would want to die at home if faced with the end stages of a terminal illness. And most Americans, according to recent surveys, support the removal of life support in cases like Mrs. Schiavo's - for a spouse or child who appears to have no chance of recovery, or for themselves in the same predicament. (At time of writing, 12 days after her feeding tube was removed, Schiavo remained alive in hospice care.)

While Oregon is unique in some ways - it's the most "unchurched" state, with residents less likely to be members of or regularly attend churches, synagogues, or mosques - it also reflects the kind of leave-me-alone libertarianism that such legendary conservatives as the late Sen. Barry Goldwater (R) of Arizona espoused.

There's a political landscape and history here reflecting an independent spirit, a willingness to try something new, to elect maverick politicians - including such Republicans as former US Sens. Mark Hatfield and Bob Packwood. While both of the state's current US senators - Democrat Ron Wyden and Republican Gordon Smith - personally oppose assisted suicide, they have agreed to follow the majority public opinion supporting the law.

If recent polls are accurate, large majorities of Americans want Uncle Sam at arm's length - at least on highly personal issues related to end-of-life care.

The Oregon Health Plan, whose aim is to help greater numbers of low-income people by matching the types of treatment covered with the state's ability to pay for them, has been another factor in addressing end-of-life issues now dominating national thought and discussion.

Granted a federal waiver, Oregon extended its federal-state Medicaid coverage to everyone below the poverty level in 1994, the same year voters first approved physician-assisted suicide. The idea behind the state's needs-based healthcare program was to provide Medicaid to all those who were financially qualified, while limiting the kinds of medical procedures available. In essence, it drew the line on procedures instead of individuals.

While it added tens of thousands of previously unqualified recipients to Medicaid rolls here (mostly women and children who were among the working poor), critics called it healthcare "rationing" - lower-quality care for those of lesser means. Supporters said virtually all the most important medical treatments were included, including preventative procedures and hospice care.

The plan established a list of some 700 treatments and procedures, ranking them according to seriousness. Lawmakers set the healthcare budget, which then determined where the "cutoff" point on that list would be. In tough economic times the cutoff was higher on the list - a form of rationing.

The Oregon Health Plan sparked a lot of interest among healthcare professionals and officials in other states. But in recent years - marked by high unemployment, lower government revenues, and tighter budgets here - the state has had to sharply reduce the number of recipients above the poverty level (which is about $19,000 a year for a family of four). This has brought the number of those without medical insurance of any kind back up to record levels.

It's also heated up the debate over health insurance, particularly as lawmakers and the White House argue over whether to cut the rate of growth in Medicaid.

All of this - with Oregon at the cutting edge - could affect the debate that Terri Schiavo's case has generated.